IT'S BEEN A WHILE MY FRIENDS.
Tons of anxiety, weeks of chemo, chemo changes, moving, hcg drops and finally I am done! This journey is somewhat over. Let me explain.
The last thing I posted was in December and I was still on the methotrexate shot. Easy, simple shot that gave me very minimal side effects. Well, in January my levels plateaued and I had to change my chemo that was way harsher. The chemo was via iv. I was given a steroid and anti nausea medication before the actual chemo. I had 2 rounds to knock it to negative, plus 3 precautionary rounds to make sure this disease does not come back.
This chemo gave me the worst side effects I have ever experienced. I felt like absolute shit. Here's some of the side effects I had:
After the first two rounds, I decided I had to move to Oahu for a change of environment, a more positive environment. You see, my anxiety was so bad I would go to the doctors almost every day, to the emergency room twice a week. It was so bad I even flew to O'ahu to be seen at the emergency room there because I did not trust Maui's doctors. I was in a very bad mental state, and I'm so glad I decided to move to work on my mental health.
After 8 long months of chemo, I'm happy to announce I am done! My levels go from 1 to <1 every other week. I'm supposed to be doing monthly tests, but I do not feel comfortable with that yet so I do bi-weekly tests. I will have to do tests for the next year for monitoring. Actually, I will be monitored for the rest of my life. If I ever decide to get pregnant again, I will be considered a "high risk" pregnancy. That's a whole other story.
I finally was able to get a picture of my chemotherapy shots because the nurse went away for a split second.
There it is. Two shots, 90mg of methotrexate that go into my butt cheeks every Monday. I check in with Donna, then I think she or one of the nurses lets the pharmacy know to mix my medication. I wait for about thirty minutes before these shots come. Isn't it weird? Yellow chemo. This stuff makes me nauseous right after, it is not fun at all.
However, I do have good news! As of today, December 4, 2017 my levels are at an all time low of 369!
At todays appointment I was honestly expecting my numbers to rise a little. My body is ridiculously resilient to the medication sometimes. I have no control over it.
Today the nurse told me my levels were at 1,068 which is AMAZING! I am officially 69 numbers away from being in the three digits! Yay body!
The nurse also talked to me about anxiety attacks and how I should control my breathing during an attack. She told me that when we breath in oxygen, it's clean. However that changes to CO2 and CO2 is acidic. So during a panic attack you're basically breathing in good oxygen and not blowing the acidic stuff out because you're hyperventilating. I learned something new today.
Here is a picture of the nurse (Erin) checking my medication into the computer. Before giving me the medication, another nurse also has to verify the information: my name, birth date, and dosage.
As of Monday November 13th, I have had 17 rounds of chemo.
My life basically revolves around this. If I wanted to travel, I'd have to be back in time for my next round. My gym life also revolves around this. If I'm not feeling up for it, I don't exercise. But ever since my anxiety, exercise helps me A LOT. I can't even work anymore because I'm so tired all the time.
I hate that my life revolves around this.
However I do love how much of a perspective it has given me on life. I appreciate life a lot more, and the people in my life. I appreciate my niece who's basically my first born child. If I never do get the chance of having kids in the future because of this at least I'll have many adventures.
17 rounds, 17 weeks. I wonder how many more rounds I'll need to beat this. My body is resistant.
I never said anything about being tired all the time until recently because I thought I was crazy. When I first started treatment, I'd be really tired on Monday, Tuesday and some of Wednesday. Recently, I've been tired every single day. I thought it was a lazy tired, but it's not!
Last week Wednesday I went onto the Facebook support group page and asked the ladies if they were also tired every day from methotrexate. I also asked if they worked full time, and if they were able to keep working full time throughout their treatment. One lady said she only worked part time and was only one month into treatment and already had a hard time working. Another lady said she needed naps for a few hours every day in order to keep her day going. Another lady said she had to take time off of work because she was also tired all the time.
I was so relieved that I wasn't the only one that felt tired ALL THE TIME! I thought I was crazy! Now that I know I'm not, I decided to take time off of work until my levels are down to 0, and my treatment is over.
One of the main reasons for this decision is my job requires me to drive everywhere depending on the client. I could go from upcountry to Lahaina back to upcountry, then back to town to Haiku and back to town to end the day if I had two clients in one day. We don't get to choose which cases we get, so if I'm assigned a case where I have to travel far, I can't complain about it. So when I have to drive these far distances, I feel like falling asleep at the wheel.
I think time off of work will be good for me. The only thing is my doctor. I called the doctors and spoke with his assistant (because I never do get to speak with him directly). I asked his assistant if the doctor would be able to fill out the temporary disability forms for me. His assistant told me that he would fill it out only for the times he's seen me physically. Do you know how messed up that is!? He's on another island so he's seen me about four times. There are questions on the paperwork that ask about the dates I've been treated. If he only puts the days he's seen me, the paperwork will not be accurate. For example I get treated every Monday BUT the last time he's seen me was September 11. So what is he going to put for that question? Probably September 11 even though I was just treated today (November 6).
This makes me so mad! I'd rather have the nurses fill out this paperwork because they know me better than my own doctor. Is that an option?
My Monday routine:
7:45AM - First alarm, I still got time
8:00AM - Second alarm, I still have my third alarm
8:15AM - I'M UP. GEEZ.
8:50AM - Ok do I have everything? Yep let's go.
9:00AM - "Hey Lindsey how you doing?" -Donna, the nice receptionist at oncology. I check in with her.
9:05AM - Someone takes my weight, blood pressure, and heart beats per minute
9:30AM - *DING* Pharmacy's here with my medicine
9:35AM - "Ok Lindsey I'll be with you in just a second" -Nurse. Then she tells me my hcg levels.
9:37AM - Nurse gives me my shots
9:40AM - Go home
10:00AM - Hurry eat before you become nauseous!
10:15AM - Attempt to go to work
12:00PM - Leave work because I'm so tired from the medicine. Luckily, my co-workers are SO understanding.
1:00PM - Sleep
That's basically what happens on the days I receive my treatment. Of course I'll get up and eat and try to live for the rest of the day. Sometimes I'll be so tired that I can't sleep and I'll just lay on my bed. The part that comes after 12:00PM varies.
Ever since this journey started in July, I stayed away from red meat and alcohol because I read it "feeds" cancer cells. I did eat red meat from time to time, maybe once every two weeks but of course felt so scared about how it would affect my tests the week after.
Recently my hcg results have been like this:
September 25- 6,446
October 2- 6,604
October 9- 3,882
October 16- 4,449
October 24- 2,481
My levels are supposed to be going down, not up. It went up twice, but not consecutively. My doctor is waiting for those levels to go up two consecutive times before changing my treatment and I'm annoyed at this point.
Annoyed because I stayed away from red meat and alcohol for three months, and it had no affect on me while I ate and drank to my hearts desire in Japan. If I knew this, I would've been had wine on my Friday nights or gone out with friends when they asked! But nope, for three months I was living scared.
I honestly want my l my doctor to change my medication. Methotrexate makes it go down so slow and I have to get the shot once per week. With the other medication I get it once every two weeks which means my trips can be longer than one week.
I'm going to stop living so scared and eat/drink whatever I want. If my levels go up because of it, so be it. At least my meds will change.
How does methotrexate make me feel? The doctor said it should give me mouth sores and some nausea, not so much fatigue. He's so wrong.
About ten minutes after the shot, I feel nauseous. I will usually eat something or drink water to make it subside. A few hours later, I am tired. All I want to do is sleep. Sometimes I'm so tired that I end up not sleeping at all, and I complain about it all day. I'm also usually very tired on Tuesday as well. Another side effect that I feel is sharp pain under my left rib cage, and sometimes around my stomach area. Those pains are the worst and come at random throughout the week.
It's been a little less than three months since I've started my treatment, and I feel like every week gets harder. I feel more tired, and I'm over it.
The first visit with Dr. Carney was very scary. First he did an exam on my uterus. He felt around and said he felt some "things". At the time I was 22 years old. As a 22 year old girl, you never want to hear that there are "things" in your uterus. What are those "things" and can you take it out, now!?
After the exam, Dr. Carney said I needed to do another d&c done on Oahu, as well as CT scans, and have my first dose of treatment. The only thing that crossed my mind was how I was going to pay for this. I saw Dr. Carney on a Friday, he wanted to do all these things the following Monday. Do I look rich to you?
Well Monday came and I was on my way to my second d&c, which no 22 year old should ever have to do. I remember telling myself before going into surgery that I was going to fight the anesthesia. The anesthesiologist told me that he was going to give me medicine, but it shouldn't make me sleep. I fell asleep 5 seconds later. When I woke up, I was so mad that I didn't fight it.
After the surgery, I got CT scans done. There was a fluid the doctor put into my IV that made me feel like I was peeing myself! It was so uncomfortable.
I won't get into how Dr. Carney made me wait for hours, made me miss my flight home, and change my flight out of pocket. No, I won't get into it.
When Dr. Carney finally came into the room, I was able to get my first dose of methotrexate. Methotrexate is a type of chemotherapy that is not nearly as potent as regular chemotherapy, and not inserted through an IV but an intramuscular shot. The nurse gave me two shots, one on each butt cheek. I felt violated, but I have to get used to it if I have to do this every week. Dr. Carney also told me that the CT scans showed little tumors in my lungs and uterus, but the methotrexate should kill those tumors. I couldn't even wrap my mind around the words "tumor in your lungs". I'm a healthy 22 year old. I go to the gym, I don't eat fast food every day, I drink lots of water. How does this happen to someone like me!?
I was finally able to go home. On the plane ride, I began to cry on my boyfriends shoulder because I felt so tired and had chest pains from the medication. I told him that it all began to hit me because I felt like absolute crap, and hated that I would be feeling like crap every week.
All pregnancies usually end with a baby, right? Apparently not.
After the d&c, I had to get weekly blood draws because that's how the doctor will determine if my hcg levels are going down. HCG is the hormone that is present in your body only if you are pregnant. In my case, I wasn't pregnant, so the hormone shouldn't be in my system.
My hcg levels started at 175,000 before the d&c. A nurse called me weekly to let me know that my levels were going down. Three weeks after the d&c, my hcg levels were at 2,000 which was great! On the fourth week, the nurse called to schedule an appointment to speak with the doctor . My heart sank straight to my stomach. Why else would the doctor want to speak with me in person?
On July 18, 2017 I became part of the 2%.
The doctor explained that my hcg levels went up. Why? Possibly because whatever tissues were left from the surgery hooked onto a blood supply and began multiplying again. The doctor said it turned cancerous; the molar pregnancy turned into gestational trophoblastic disease. The doctor also said I would have to see a gynecologic oncologist, Dr. Carney, from Oahu. Luckily, Dr. Carney flew to Maui that same week.
My "pregnancy" ended with cancer.
Molar pregnancies are very uncommon. Not many people have heard about a molar pregnancy, so I'm here to share my story.